Every Lyme disease patient has a unique experience with tick-borne infection. We start with this basic fact, because it is crucial for supporters to validate and respect every patient experience. Think about a patient that you care for and love. Have you spent time learning about their experience? Have you acted in ways that validate and respect what they’re going through?
We hope you will appreciate the discussion below and reflect on ways to support every patient by honoring their experience. While this is not an exhaustive list, here are five best practices that we have found helpful for supporters.
1) Listen and Learn — Acknowledge that you do not know everything about what a patient is going through. Ask questions, listen, and learn more about their experience.
2) Be Patient — Provide space for a loved one to cope with Lyme disease. Give them time to determine strategies for managing symptoms, treatment, and daily life.
3) Embrace Change — Recognize that a patient’s experience with tick-borne infection may lead to changes in their life, perspective, and relationships. Embrace this change.
4) Expect Peaks & Valleys — Understand that there will be positive experiences (peaks) and negative experiences (valleys) on the Lyme journey.
5) Take Action to Help — Ask what you can do to help. Honor the response you receive. It may be enlightening and help you to better understand their experience.
And a bonus that must always be there: Believe them.
The beginning of a new year is often a time of reflection on past and future experiences. As a supporter, you play a crucial role in the experience of a patient, and the Generation Lyme community supports you in validating and respecting their experience.
We would be remiss not to acknowledge that your own experience as a supporter is also individual and unique. We validate and respect the experience that you have as a supporter, and we thank you for your dedication to and care for the patient in your life.
If you would like to discuss the topic of experience with other members of the Generation Lyme community, join us for a Meet-Up. Tap the link below to find the Meet-Up schedule and to RSVP!